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2014 Feature Story – Erin Riviere Lett

May 2015

Erin has had a great year! She is finishing up grade 3 and continues to dance up a storm, even performing on stage in her first full scale musical this year. She continues to visit schools and share her story to enlighten people about epilepsy and raise awareness. Thanks to daily medication and the wonderful support of her doctors and nurses at McMaster Children's Hospital, Erin has been seizure free since December 2013. At her last appointment, the doctor even mentioned the possibility of weaning her from her medication if she can go another 8 months without a seizure. Erin and her Purple Butterflies plan to join Katie at Sir Sam's this July for the 4th Katie's Run. See you there!

Michelle (Erin's mom)

Erin's Original Story, 2014

Hello. My name is Erin. I am 8 years old. I am in grade 2 in a French immersion class. It's really fun to learn another language. On the weekends, I go to dance classes. I am learning ballet, jazz, and musical theatre. I finished my ski lessons in March and am moving on to level 6 which means I can now ski more runs on the hill than my mom. I am a first year Brownie and I just started basketball too. I love to have sleepovers and have a great group of friends. My best friend is my dog, Charlie! We both love the cottage! Oh, and for those of you who don't know, I have epilepsy.

I had my first seizure when I was just one year old. Then I never had another one until October 2012. It was in the swimming pool during my lesson. I don't remember what happened but my mom says I just stopped swimming and the lifeguard sat me on the edge of the pool. I was staring at the lights and mom thought I might have hurt my neck because it was kind of crooked. She came to talk to me but I couldn’t answer her. I was like that for about a minute. The people at the pool called 911 and I went to the hospital in an ambulance. That was kind of cool but I didn't like having to get my finger pricked for a blood test or the oxygen tube up my nose. The doctors and nurses asked me all kinds of questions like if I knew my name or what day it was. I was kind of confused at first but then I could remember everything but I never remember my seizures. They make me very tired though.

My seizures aren't what people think of when they hear that word, I don’t move at all. We now know that I have two different kinds of seizures but we still don’t know what triggers them. Focal seizures are when I am still able to move and walk around, but I'm not sure of what I'm doing. I look normal, just confused, and I can get lost in my own house or school. Most often I have partial complex seizures which make me stop moving completely and stare off to the right. I can't talk to anyone or answer their questions, even if I want to. Sometimes I scratch myself but I don't know that I am doing it.

The doctors at McMaster Children's Hospital set up the first of many tests for me. I had my first EEG that November. It didn't hurt but it was really hard to sit still that long. Then, around my 7th birthday, I had an MRI to look for tumours or bruises on my brain. Just a few months ago I had to stay in the hospital for 3 days while they did a video EEG. The wires were cemented to my head for over 24 hours, I even had to sleep with them on, while a video camera recorded just about everything I did. The doctors were trying to find out if I was having seizures in my sleep. Thankfully they don't think I do.

I'm one of the luckier kids with epilepsy. I take medicine two times a day now and it usually helps stop my seizures. I take it after breakfast and after dinner. It tastes like cherry. I've had to take it every day, twice a day, for a year and a half now. When I first started to take the medicine it made me hyper and really hungry. It still makes me hungry but I can feel when I'm getting hyper so I try to calm myself down. This medicine won't cure my epilepsy but it will hopefully stop the seizures. Unfortunately, I still have seizures even though I take the medicine. My last seizure was on Christmas Eve and it lasted almost 10 minutes. For 10 minutes I couldn't move my body or talk to my parents. I was completely frozen. When I came out of it, I had a horrible headache, my brain really hurt, but I didn't have to go to the hospital. Whenever I have a seizure, the doctors tell me I have to take more medicine. If I keep having seizures, they will put me on different medications that I will have to get used to all over again.

I say I am one of the luckier kids with epilepsy because my seizures are almost under control. I'm still not allowed to swim in the lake without a life jacket on, and I have to take a buddy with me when I go on errands at school in case I have a seizure and fall, and my mom makes me cover my eyes whenever there are flashing lights in a movie. But here is why I say I am lucky: During an epilepsy presentation at my mom's school we learned about an inspiring 16 year old girl named Katie Woudstra who had to stop going to school when she was 14 because her seizures were so bad. She was having them almost every day and was getting hurt during them. She was so sad that she wanted to have the doctors operate on her brain to help her, but they couldn't. I decided right then that I wanted to join "Katie’s Run for Epilepsy" to raise money for research and to let other kids with Epilepsy know that they weren't alone. In the summer of 2013 we walked up, then down a ski hill by my cottage. My group, Erin's Purple Butterflies, raised over $500 but more importantly, we let people like you know that it's OK to talk about epilepsy, to ask questions, to learn more about it. This past March I gave 7 presentations at my mom's school to the kids from kindergarten to grade 5. I shared my story with them and answered their questions about Epilepsy. In return, they all wore purple on Purple Day to show their support for Epilepsy.

There is no cure for epilepsy…yet. I hope one day there will be for kids like Katie and me…and for the 15,000 people in Canada who will be diagnosed with epilepsy this year. Yes, I have epilepsy and yes, some things in my life are different. But I'm not different. All I want is for my friends to understand what this (medic alert) bracelet is for and why my picture is up on the wall in the classroom. I have epilepsy. And if you want to know more, please just ask me.

Erin Riviere Lett
Burlington, Ontario

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